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Author
Topic: TO START MEDS OR NOT (Read 8072 times)

Granny60

Almost every month I hear from someone who is about to start meds and are afraid because the thought of side effects scares them. I want to remind all of you at the edge of this precipice that if you DO NOT start meds, HIV WILL PREVAIL and you will progress to AIDS. For some people it takes only months, for some people it takes years, But this bug will consume you bit by bit as you procrastinate. Please listen to your body and your doctor. People that are just HIV positive do better than those who progress to AIDS. It takes less time for your body to recover the earlier you start. The side effects are less for those who can start earlier than for those whose body has been ravaged into the bottom of an abyss by AIDS. If you are one of the rare ones that has an issue with the fine new generation of meds, there are a lot of options that you may switch to that you can do well on. Do not be afraid. Many many people start on meds and not only do well, but find they have regained a part of their life that they had slowly lost and didn't even realize it. Be well my friends!

« Last Edit: November 29, 2010, 09:55:18 PM by Granny60 »

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nychope1

There is a ton of literature and research articles around to back up early treatment. There is no reason to wait passed getting the results from blood work and a resistance test. There are lots of different kind of meds and they will work. Knock the shit out of this virus before it knocks the shit out of you. You have nothing to fear but fear itself!!!! (I've heard that somewhere before)

BTW- I am totally digging Atripla. The dreams are cool when I can remember them and I have been sleeping better than I have in a long long time. I have a ton of energy in the morning and during the day and I don't drink caffeine. All of the unfounded apprehension I had about starting on meds, though I got on them within two weeks of being diagnosed, was a waste of energy. It's just the stigma and mental crap that screw things up more than anything physical. Meds ain't what they used to be.

nychope1

As well, many here have a penchant for the obvious...of course one should consult with an good ID doc! How else would you get your meds?

As much as I think there a lot of nice members posting helpful links here one should not rely on any particular forum or otherwise to make an educated decision.

Having said that, in my glorious opinon, if my doc, who is the the Directior and Head of the ID and AIDS department at a pretty well known hospital here in NYC told me not to start meds even though I was not resistant to any and relatively healthy, and had a VL above detectable and a lower than normal CD4 count I would tell him to kiss off and find another to get me meds. Hey, but that's me.

Oh..btw - he told me, when I wasn't sure whether to go on meds or not, if it were him he would.

As much as I think there a lot of nice members posting helpful links here one should not rely on any particular forum or otherwise to make an educated decision.

Having said that, in my glorious opinon, if my doc, who is the the Directior and Head of the ID and AIDS department at a pretty well known hospital here in NYC told me not to start meds even though I was not resistant to any and had a VL above detectable and a lower than normal CD4 count I would tell him to kiss off and find another to get me meds. Hey, but that's me.

Cheers..

Good for you kid! You should totally do whatever it is you just posted about.

One of the problems I have with people who are not only newly diagnosed, but also newly infected going straight on to meds is that those people will never know if they are a LTNP or not. There are few enough of these people around as it is and it's likely they hold the key to future treatments, vaccines and possibly even that all elusive cure. If we're medicating these people before it can be ascertained one way or another, we're going to have even fewer to help with research.

The jury is still out as to whether or not immediate treatment has any true benefit. We don't have anyone who has been on today's first-line treatments for twenty or thirty years - so we also don't know the impact long term use may have.

I am definitely NOT anti-treatment, far from it. I just think some people jump into it before they really need it and I have to wonder how many LTNP we're missing in the process.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

nychope1

Yes.. great point. I often wonder about controllers and being a possible controller. Since my numbers never really got a chance to move anywhere.

Can a person who was just tested positive request a test to see if they harbor that mutant gene? As well, if a person can get checked for it would being on meds effect the outcome?

I am going to my doc today for the first time since starting meds and i am going to ask him. I will report back with what he says.

Let me also add... again, these are my feelings on it; There is no way I could wait to get sick or have my CD4 numbers get so low as that be a catalyst to start meds. It is my goal never to be below a cd4 of 500. No virus mulling around one's body unabated can be good. I can't rationalize that at all. It's just too big of a crap shoot and I'm a gambler!

I would be interested in hearing if there is a test to see if you have the "mutation" that would allow you to be a LTNP.

I have to disagree however with delaying treatment. I'm not a Dr but if HIV can lay dormant in infected cells only to become active once you stop medication wouldn't it make sense to start treatment ASAP to prevent as much infection as possible?

The problem is not everyone finds out they where infected the minute it happened. For me. I didn't find out until almost 3 years after the fact. The tests I had done 3 years ago were all negative and I assumed they were correct (they were I suppose I just hadn't switched over yet). Since I hadn't had any exposure since then I assumed I was still negative. Even though the Dr states it hasn't affected me negatively since my immune system is still functional and I can start meds now without any negative effect, I wish I had started three years ago.

To be honest, I'm not sure if they've yet isolated a gene that LTNPs share. I do know they know about the gene that seems to confer immunity from infection in the first place and funny enough, I just ran across an interesting article about that today.

You might be able to find the answer to your question over at the Zephyr Foundation. I don't have time to look right now because I've got a pool match this evening and if I don't get myself offline and into the shower, I'm gonna be late - and I'm the captain!

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I would be interested in hearing if there is a test to see if you have the "mutation" that would allow you to be a LTNP.

I have to disagree however with delaying treatment. I'm not a Dr but if HIV can lay dormant in infected cells only to become active once you stop medication wouldn't it make sense to start treatment ASAP to prevent as much infection as possible?

The problem is not everyone finds out they where infected the minute it happened. For me. I didn't find out until almost 3 years after the fact. The tests I had done 3 years ago were all negative and I assumed they were correct (they were I suppose I just hadn't switched over yet). Since I hadn't had any exposure since then I assumed I was still negative. Even though the Dr states it hasn't affected me negatively since my immune system is still functional and I can start meds now without any negative effect, I wish I had started three years ago.

No one said you (or anyone else) should delay treatment.

Treatment decisions are something you should discuss with your primary care provider. Those decisions will based on many things, all lusciously tailored to your succelent circumstances.

Or whatever.

MtD

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nychope1

From Ann "To be honest, I'm not sure if they've yet isolated a gene that LTNPs share. I do know they know about the gene that seems to confer immunity from infection in the first place and funny enough, I just ran across an interesting article about that today.

You might be able to find the answer to your question over at the Zephyr Foundation. I don't have time to look right now because I've got a pool match this evening and if I don't get myself offline and into the shower, I'm gonna be late - and I'm the captain! "

From Ann "To be honest, I'm not sure if they've yet isolated a gene that LTNPs share. I do know they know about the gene that seems to confer immunity from infection in the first place and funny enough, I just ran across an interesting article about that today.

You might be able to find the answer to your question over at the Zephyr Foundation. I don't have time to look right now because I've got a pool match this evening and if I don't get myself offline and into the shower, I'm gonna be late - and I'm the captain! "

Granny60

Y'know that highly trained specialist who has all of your medical records in one place and has given vast consideration to the particular issues which make up your medical case.

Medication RIGHT NOW doesn't suit everyone. Folks need to remember that internet forums should be a general guide.

In light of which, the wrinkly old jazz hands what make up the OP of this thread may not seem so wise.

MtD

If you would pay attention to what you read, it says in the OP, listen to your doctor, and just because your dick and rats ass are withered , it does not mean I have any wrinkles. And I don't like jazz. too damn slow.

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Granny60

To be honest, I'm not sure if they've yet isolated a gene that LTNPs share. I do know they know about the gene that seems to confer immunity from infection in the first place and funny enough, I just ran across an interesting article about that today.

You might be able to find the answer to your question over at the Zephyr Foundation. I don't have time to look right now because I've got a pool match this evening and if I don't get myself offline and into the shower, I'm gonna be late - and I'm the captain!

One of the problems I have with people who are not only newly diagnosed, but also newly infected going straight on to meds is that those people will never know if they are a LTNP or not. There are few enough of these people around as it is and it's likely they hold the key to future treatments, vaccines and possibly even that all elusive cure. If we're medicating these people before it can be ascertained one way or another, we're going to have even fewer to help with research.

The jury is still out as to whether or not immediate treatment has any true benefit. We don't have anyone who has been on today's first-line treatments for twenty or thirty years - so we also don't know the impact long term use may have.

I am definitely NOT anti-treatment, far from it. I just think some people jump into it before they really need it and I have to wonder how many LTNP we're missing in the process.

I have to agree with ANN on this one !

I went 18 years without MEDS !

They were GOOD years , the best years of my life !

I to have to wonder IF starting MEDS and feeling like SHIT is really worth it !

I to have to wonder IF starting MEDS and feeling like SHIT is really worth it !

if your numbers were going downhill or bottoming out,then starting med and feeling like crap probably beats ending up dead

starting meds too early isn't really advised (nychope definitely derailed this thread throwing out that red herring LOL); but complaining or crying about starting meds when it's time, is just stupid. untreated HIV results in AIDS; and AIDS is the same terminal disease it's always been.

I'd rather take meds than be dead (that sounds like a tshirt slogan LOL)

I was diagnosed positive in march and I need to adjust my stats to reflect what I saw today. My doctor has taken done 3 labs so far this year. The last labs actually looked very good, without meds, I went from a low 480cd4 in march to 560cd4 in August, my viral load also dropped from 18,000 to 1,400 I'm really excited about that result.

Those results aside, I have been having issues with fatigue, which I seem to have gotten a handle on by exercising, vitamins and getting better sleep.

But I still have these problems with brain disfunction, if you will. I have always typed a perfect sentence or said the right word and I've been saying the wrong words and writing we when I mean to write guess. After reading many threads on here and talking to some long-timers about issues with brain function and also allowing myself to get run down with this virus, I've decided to not let the virus run it's course but rather take a proactive step in kicking this bugs ass. This is not totally my decision but my doctor also wants me to start taking meds right away. He said he wanted me to start 3 months ago on this day, Nov, 30th. I have read alot of threads. And am convinced that starting meds earlier is better than waiting until I'm desperate.

My doc also talked to me about wanting to retain cell memory and he believes that people who start meds earlier do better than if they wait. So today I have my first bottles of Issentress and Truvada. I havn't started yet but will start on the 5th because I will not be able to get another months supply til January. In my state, the nurse seemed to think that we will not have anymore ADAP funds, so I am going directly to the Pharmaceutical companies, Leatherman.

to reiterate, cd4 of 480 is not a low count. it is just the lowest I have had. Mine could have been lower at some point but who knows. I have felt the seroconversion and remember it very well. I have had times this year that I have felt very similar to that time. I want to get better and feel better and I don't want to wait til I've been sick as hell and on my death bed to start doing something about it. And again, this is my ID doctors decision as well. We switched from Atripla to Issentress and Truvada because of issues with rashes with Atripla and brain fog associated with Atripla. I am stoked and ready to get on with my life. please don't be down on me because I am still pretty healthy and want to start meds now!

Granny60

with only 1500 elite controllers identified in a world out of 30,000,000 HIV infected people it would be a little selfish to ask the next 30 million people to withhold meds to see if any of them have some genetic makeup that might be studied to see if it might produce an avenue of successful research. We are lucky to live in an age that the wait to start meds nolonger requires a CD4 of 200 or below and a hospital stay. Every person is different and doctors opinions vary, but evidence continues to support that people do better starting meds before their immune system and body have been destroyed. You can get more life out of an engine adding oil as needed instead of driving it until it is completely out and has thrown a rod out the side and then trying to get it going again.

Okay... have fun folks. Off to the doc to bother him about the crazy shite I read here.

Later..

Ok, so what did he have to say about the Am I Infected? forum? Or is it not fit to print?

Anyway, it totally mystifies me why some people here equate not starting treatment right away after diagnosis with waiting until you're really ill with low cd4s. That certainly hasn't been the case where I'm concerned. I've been poz since the spring of 97, I'm not an elite controller, but I'm not on meds and I'm doing ok. When my numbers indicate a need to go on meds I will, but I'm ok in the mean-time.

with only 1500 elite controllers identified in a world out of 30,000,000 HIV infected people it would be a little selfish to ask the next 30 million people to withhold meds to see if any of them have some genetic makeup that might be studied to see if it might produce an avenue of successful research.

Bollocks.Roughly one in 300 people who test positive for HIV are controllers...

You're confusing people who have enrolled in studies (identified) with the total population of controllers.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I was a LTNP for 21 years and that meant I went 21 years without having to take meds and when I did start the meds they weren't as toxic as they were when I was diagnosed and I had several treatments to pick from.

Is the START study still on or what? I can't keep track. It seemed like the last thing I read was all or parts of it were stopped. Is that correct or did I dream that? It would help to have comprehensive studies as to what is best. Failing that, I guess we all have to listen to our bodies and docs.

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nychope1

Well, I asked about the test to see if someone is a controller. He stated that I was most likely not one... and that it was possible to find out about the gene that exists in a few folks that don't move on to AIDS. He also said that there are other ways to figure that out and one of course, for the newly infected and diagnosed, is to get several blood tests if the original cd4 wasn't below a certain point and the VL wasn't exploding. He told me that a few months would not make or break a decision if the original diagnosis wasn't terrible. In my case I could have waited but choose not to.

The interesting thing about my doc is he never told me personally to start meds. We analyzed the results and he let me make the decision which I understand and appreciate. But there was breathing room.

I gathered from this that if a person is HIV positive and has a low VL in the four figures say and a cd4 count above 500 then maybe it is safe to wait for a few moths and further tests to start meds.

He thought I made the right decision so in this case i deferred to my doc...

I am in no way saying that everyone should wait. I'm not trying to tell anyone what to do or what not do. What I am trying to get across is that there are other alternatives. Hiv is in no way a one-size-fits-all virus. What might be appropriate for one person might not be appropriate for another. That's why it is so important to not only work closely with your doctor, but to also do your own reading and learning about the virus and its treatments.

If you're interested, here's my number history... (Where the VL appears as 00,000 it's because it wasn't tested for, not because I was UD. Doing that way keeps the list neat and easier to read. The only exception is my last results. Because we thought I might be starting meds and would have to make an earlier appointment, I was contacted as soon as my CD4 result was back. My VL result wasn't back yet and I won't find out what it was until my next appointment in the New Year. Yes, I normally wait three months to find out my results. Long story.)

My doctor and I discussed starting treatment if my third results this year came back with my CD4s still in the 300s but as they went back up over 500, we're going to see what happens next year. I've been poz since the spring of '97 (hindsight is a wonderful thing) but not diagnosed until February 22, 2001.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

nychope1

Thanks for sharing your info, Ann. You are certainly a brave and tough woman.

The context of time is so important to an individuals experience with all of this. In the here and now, I would not have waited much past a second blood test even if I had a doc that wanted to wait. As you see I didn't. Again, to be perfectly clear, this is my opinion and choice based on what I learned from my doc and my own research. I'd rather risk the meds side effects than the viruses. I'm not that brave or tough. So far for me it's been ok.

btw - I get my blood work back next Tuesday and will let you know where the numbers are.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Granny60

OBollocks.Roughly one in 300 people who test positive for HIV are controllers...

You're confusing people who have enrolled in studies (identified) with the total population of controllers.

Doing as it suits you, you are ignoring the word "elite". You damn well know that nearly every person is able to control HIV to a certain extent anywhere from a period of weeks to many years depending on how long their immune system is able to fight the virus and how adept the virus is in converting their DNA into RNA. It is not unusual for some infected people to never have viral loads over 30,000 for 15 years, yet other's a viral load of 30,000 can be devestating. Studies have idententified 1500 ELITE controllers world wide that manage to keep viral loads suppressed and CD4 counts high despite the presence of HIV in their system. It is nice that you have done as well as you have Ann, but you do NOT fall in the catergory of an ELITE controller since your viral load consistantly remains in 5 digits and you have many times had CD4 drop out of the 490-1740 range of normal healthy un-infected adults. You yourself have referred to the term elite controller several times. I am not blind and have read these forums for several years. Some Elite controllers can maintain a zero viral load for many years . I do hope you continue to do well as the little buggers circulate through your system like a jacuzzi.

The HIV Controller Consortium proposes to perform detailed host genetic factors associated with spontaneous control of viremia in the small subset of persons who are able to achieve this state without antiviral therapy. Through a nationwide collaborative effort with academic institutions and primary care physicians, we have established a cohort of 180 persons that we call "HIV controllers", namely persons who maintain viral loads of less than 2000 copies/ml despite never having been treated with antiviral therapy. 78 of these persons have maintained viral loads of less than 50 copies/ml plasma, which we term "elite controllers".

You damn well know that nearly every person is able to control HIV to a certain extent anywhere from a period of weeks to many years depending on how long their immune system is able to fight the virus and how adept the virus is in converting their DNA into RNA. It is not unusual for some infected people to never have viral loads over 30,000 for 15 years, yet other's a viral load of 30,000 can be devestating.

Sure thing. I've never denied this. I've also never denied that a viral load of 30,000 isn't necessarily "devestating" (sic). You can't go on numbers alone, you have to look at the bigger picture.

We're all different - I hope we can agree on that at least - and everyone should arm themselves with knowledge and do what they and their doctor think best. That's what I'm doing. I'm not going against medical advice given to me - nor do I suggest any one else goes against medical advice given to them.

Studies have idententified 1500 ELITE controllers world wide that manage to keep viral loads suppressed and CD4 counts high despite the presence of HIV in their system.

There are more than that. Not all elite controllers are in studies. And besides, as I already pointed out, I wasn't talking about the sub-set of elite controllers, I was talking about the larger group of LTNP. In the links you yourself provided, one cites 1% of all persons infected will fall into this group while the other cites 5-15%. The research article I linked to cited "Roughly one in 300 people who test positive for HIV are controllers". Controllers are LTNP - elite controllers are a subset of these, as you will see when you read the blurb you quoted (quoted again by me here below) in bold. (read the last two sentences)

So you see, because not every LTNP comes to the attention of research scientists, we cannot be sure just how many LTNP there are and by pushing EVERYONE on meds as soon as are diagnosed, we won't be finding many more new ones.

It is nice that you have done as well as you have Ann, but you do NOT fall in the catergory of an ELITE controller since your viral load consistantly remains in 5 digits and you have many times had CD4 drop out of the 490-1740 range of normal healthy un-infected adults.

Never, ever have I ONCE claimed to be an elite controller, because I know I'm not. I've also never claimed to be a LTNP, again because I'm not. I am a LTSP.... that's slow progressor, not non-progressor.

You yourself have referred to the term elite controller several times. I am not blind and have read these forums for several years.

Sure I have, but "several times"? Maybe two, three times tops and never in relation to myself. Any time I've ever mentioned elite controllers has been in the context of explaining to someone about LTNP.

The HIV Controller Consortium proposes to perform detailed host genetic factors associated with spontaneous control of viremia in the small subset of persons who are able to achieve this state without antiviral therapy. Through a nationwide collaborative effort with academic institutions and primary care physicians, we have established a cohort of 180 persons that we call "HIV controllers", namely persons who maintain viral loads of less than 2000 copies/ml despite never having been treated with antiviral therapy. 78 of these persons have maintained viral loads of less than 50 copies/ml plasma, which we term "elite controllers".

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

For the newly diagnosed this is most important. All one has to do is read all the posts here from folks who didn't get on meds right away. No one ever, EVER should let a VL get out of control. Plus all the research that is being done. And the over whelming consensus.

YO... newly infected.. after the pow wow with your doc get on meds! There is little reason to wait. Google, research, read...They will help you in the long run and of course the short run.

Some of the LTS may not like this and think it is hurtful but frankly this message simply may not be for you. It is most important to give newbies the faith and hope and MOSTLY the confidence that meds will help them stay healthy. Forget all the talk about side effects. Every drug from aspirin to cocaine has side effects. This stuff is nothing.

Remember newbies to diagnosis and meds.. most people are doing fine on meds. The stories you hear here are mostly from those who are having issues with them. My point being is the one's who are doing ok don't need to ask about advice so they're not posting. My observation.

This place is pretty pro meds, but we like to encourage an informed opinion with a history of blood results before we give our opinions whether someone should or should not begin meds. Only in extreme cases (Read: sub 200 CD4) do we encourage people to go whole hog for meds right off the bat.

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nychope1

Qoute "YO... newly infected.. after the pow wow with your doc get on meds! There is little reason to wait. Google, research, read...They will help you in the long run and of course the short run."[/quote]

Yes Hellraiser...

It is important to confer with your doc. That's the best way to get your meds in this neck of the woods.

As far as a history of blood work.. I am on the fence about that. What are you looking for besides resistance to meds and VL and percentage and, ya know the routine. The resistance is the most important after that don't F#*K around. You're pos your're pos. Yeah my doc says a couple months won't make a difference but I personally don't buy it. I insisted he put me on meds after my first blood work. So I stand as an example.

as I was just asked to peer counsel yet another patient at my clinic about why he should consider starting medications (100k VL and 278 cd4s) and why he shouldn't be "scared" of the meds and their side effects (when clearly scientifically the outcome of untreated HIV is AIDS and then death), and since I have read more threads here than I can count where people have the meds in their possession and are "afraid" to start or they are complaining of how they have gone X amount of years without them and have reached the point of needing meds and yet are reticent to take them, I think the originial post was well-timed - as it would be if it was posted most any time of the year since there are always newcomers to the time of needing medications.

it's a silly shame that this topic got dragged so far off course, to talk about elite controllers and LTNPs, since the vast majority of people simply do not fit in those categories. Nor was the topic about starting meds earlier than recommended.

Clearly if your doctor, your blood work, and you (with the right attitude) think it's time to go onto meds, since that's the only way to stave off the longterm destruction of your immune system by HIV, then by all means, chin up and take those meds. Usually after a short time, the temporary side effects to adjusting to the meds will be over and you should actually see renewed health as the viral load plummets and your tcell count recovers. Thankfully in this day and age, the side effects are vastly different that in the early years of treating HIV; and if by chance the first regimen you try has longer lasting side effects than you can or want to deal with, there are others medication choices to try.

Many people take many pills every day to stay healthy and stay alive, and treating HIV is really no different; matter of fact, quite often, the medications against HIV are easier to take than those for other illnesses. However, unlike with other illnesses, HIV/AIDS is still the same terminal disease that it's always been and if you do not take the appropriate action of taking meds once you have reached a certain point (usually <200 cd4 and with an opportunistic infection as CDC guidelines have been for years) then you may not recover. More recent studies are showing that starting meds at an earlier point (when your immune system isn't so damaged) may actually enable you to have a more healthy and functional life.

I am in no way saying that everyone should wait. I'm not trying to tell anyone what to do or what not do. What I am trying to get across is that there are other alternatives.

I can totally understand your position and advice; however you have fallen for the red herrings that others have thrown into this topic (starting meds early and not listening to the advice from your doctor) and I believe that's why the OP took issue with your comments. The first post in this thread had nothing at all to do with where this thread has been taken to by others. There are no alternatives to staving off HIV when the time has come for one to go onto meds.

Almost every month I hear from someone who is about to start meds and are afraid because the thought of side effects scares them.

cleary the OP was referring to people who have been counseled that is is time for meds (ie they are speaking with a doctor, they are NOT elite controllers nor LTNPs - which many newbies seem to like to confuse themselves with just because they are early in their diagnosis LOL) and yet are reluctant to take the meds - for fear of side effects, for making HIV "real", for whatever non-medical non-scientific reason. At other times, folks hemming and hawing about taking the meds have been confronted around here for perhaps being denialistic as we know the meds are the only solutions once a person's HIV viral load and cd4 count have reached the critical points. (I need only mention our friend Etay to explain how someone is quite frankly told to go onto meds or they are a denialist to prove that's the general opinion of the members of these forums)

All this confusion over elites and LTNPs, and even nychope's nagging about starting earlier than recommended (I would suggest you start your own thread about starting meds early if that's what you would like to discuss nychope. The thread was originially directed towards people who have met the correct critieria yet hesitate to start their life-saving medicals for foolish reasons), all that other stuff really has no place in a thread about people who have been counseled by their doctors to start meds, and who are just scared to take the meds due to worries over side effects.

to those people I say: the meds are your friends (more than google since they didn't even promote WAD) so take your meds, and get on with your life.

nychope1

Hahaha.. Yes Leatherman.. I am nagging for good reason. You're assuming that a newbie is going through old posts. So I repeat the message. I'll be taking in on a new gig shortly so my time here will be limited.

Anyway.. You're message was very concise and eloquent. I thank you and I recommend any newbies and those who are on the fence about meds read it.

Having said that.. there is this constant argument that someone has said not to confer with their doc? Where and who said that? Maybe I missed it.

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Granny60

Bottom line, is HIV/Aids diagnosis can be scary for a lot of people. The thought of going on meds can also be scary. Add to that gay or stigma issues, and declining health some people get so scared shitless: they are afraid to add meds to what they are dealing with at the detriment of their own health and against the well reasoned advice of their doctors. If we are not here to support those people, then we are doing a complete disservice to humanity and this whole website should be shut down

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nychope1

The stigma and the fear has to be diminished. Shite man I went through it. Recently. I can relate. The fears are unfounded and if I can drill that into a newbies head I'm going to do it. Fear, in the proper context and rational, is a natural human feeling if one is alive to feel it.

Ya know, many of you have been involved with this all a long time. It may be a forest form the trees issue. I had to really sort through this forum and other articles and such to feel comfortable about taking meds. A newbie, especially a young kid, that is just coming here to find information and get support need to know that after CONFERRING WITH THEIR DOC getting on meds, if it is appropriate, is paramount in staying healthy. How many times have I read here, "I wish I started meds sooner."

I had a couple of members here that really went the distance in getting me to start and stay on Atripla. I was scared shitless. I almost stopped after a few days and had a friend stay over the night I started because of the crazy shite I read. If it wasn't for their tuff ass love I woulod have pussy'd out and stopped. So I am passing it along. If that's not humane well then... Just another way of being compassionate.

In a forum for grownups, information cannot be sacrificed in order to give support.

Can Not.

This disease is too goddamn serious.

Hell, most LTS folks, myself included, stay clear of the JUST TESTED POS forum because our info and advice is often met with hostility. But HIV does not wait for you to get all OK with it. It does it's damage whether you are trembling in fear, wallowing in ignorance, or not.

Is taking meds a tough decision for each person? absolutely. It's a tremendous, often life-changing decision. To treat it with less than the gravity it deserves is laughable.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

nychope1

Quote from: jkinatl2 on Today at 03:53:02 PM"In a forum for grownups, information cannot be sacrificed in order to give support.Can Not.This disease is too goddamn serious.Hell, most LTS folks, myself included, stay clear of the JUST TESTED POS forum because our info and advice is often met with hostility. But HIV does not wait for you to get all OK with it. It does it's damage whether you are trembling in fear, wallowing in ignorance, or not.Is taking meds a tough decision for each person? absolutely. It's a tremendous, often life-changing decision. To treat it with less than the gravity it deserves is laughable."

you are mixing two different threads in one but....I will address this here:

Bullshit! It is this heightened "realism" about the virus that is coming from old stigmas that frightens the hell out of newbies. No one is diminishing experiences from thirty years ago. I am 45. I am not a young kid. I've been around. And someday if I get the energy up I will write all my personal experiences with f'n HIV/AIDS.HIV doesn't have to be what you are saying and it isn't. This is as manageable as diabetes if not more so. What other illness is spoke about like this? As if there was no stigma to having polio that killed and crippled people. A damn President of the US hid it for his whole life.

Yours are words that have little bearing on what a newbie will face today. So I counter that and will do so. I want nebies and the youngin's especially to know they must get tested, and treated and not worry about all this other fright talk.

It is this heightened "realism" about the virus that is coming from old stigmas that frightens the hell out of newbies.

Sorry. It's HIV. It is scary. And sometimes being frightened is the correct response. Working through that fear with the help of others who have done the same is one of the uniquely supportive functions of a forum like this.

As is the "ignore" button if you do not like the personality of someone who replies to you.

sorry, but I am with Moffie on this: If you want to start a forum for "HIV-Lite" then feel free to do so. As long as this forum is about the HIV that, untreated, can and will lead to AIDS - that can and will lead to death, it should be treated seriously.

We created a whole forum for new folks, where the gloves are pretty kid-like. This post was in the LIVING WITH forum, where we discuss in honest terms the real issues confronting those of us with HIV.

Your post "optimism will prevail," had it been posted in Just Tested Positive, would have been given far more latitude. I am assuming this disgruntled attitude stems from these events.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

nychope1

Oh geez man.. don't try to figure out my inflection from this chat. I am far from disgruntled and like the debate. You seem to have the issue with my attitude. Your assumption that yours is the prevailing post I would take to heart is odd.There were many who greatly appreciated and understood what I was writing. Both on that thread and privately. It was moved to "living.." not by me.I am not sure what this all has to do with encouraging newbies to get on meds but I had some time today and I always like a good debate if it is useful.As has been said before, there isn't a debate about what you and many others have experienced, I simply disagree with with being an alarmist. Whether it's HIV or most things in life it is my attitude to avoid such things. Many things in life are hard. Dieing, disease, war, love... it's how you approach it and look at it all that makes the difference.

I really needed and appreciated the hugs and tough, frank talk I got here from a few members when I was scared and nervous. I am glad they set me straight. I am glad my doc set me straight. I know the difference between constructive caution to a virus and simple making this like it is something that is completely earth shattering. A newbie needs to know, after the shock, to get on with it and that old stigmas need not apply.

So those who get what I am saying will get it. Those who don't won't. There are actually a lot of folks here that get it and, obviously, a lot that don't.

Oh geez man.. don't try to figure out my inflection from this chat. I am far from disgruntled and like the debate. You seem to have the issue with my attitude. Your assumption that yours is the prevailing post I would take to heart is odd.There were many who greatly appreciated and understood what I was writing. Both on that thread and privately.I am not sure what this all has to do with encouraging newbies to get on meds but I had some time today and I always like a good debate if it is useful.I didn't go away pal...As has been said before, there isn't a debate about what you and many others have experienced, I simply disagree with with being an alarmist. Whether it's HIV or most things in life it is my attitude to avoid such things. Many things in life are hard. Dieing, disease, war, love... it's how you approach it and look at it all that makes the difference.

So those who get what I am saying will get it. Those who don't won't. There are actually a lot of folks here that get it and, obviously, a lot that don't.

nychope1

That's cute. That really proved a point and added to this threads discussion on meds.

I was just diagnosed but I live in Manhattan my whole life and have had family and friends that died years ago from AIDS. I worked at "With God's Love We Deliver" in the West Village.KMA

Encouraging newbies to start meds and to try and lessen the OLD stigma's around all of this is helpful. It's ok and safe to start meds as soon as blood work is done and all. There is no need to over react and get freaked out by taking meds. That's the message. You don't agree that's fine. This is not for you.

That's cute. That really proved a point and added to this threads discussion on meds.

I was just diagnosed but I live in the Manhattan my whole life and have had family and friends that died years ago from AIDS. I worked at "With God's Love We Deliver" in the West Village.KMA

Encouraging newbies to start meds and to try and lessen the OLD stigma's around all of this is helpful. It's ok and safe to start meds as soon as blood work is done and all. There is no need to over react and get freaked out by taking meds. That's the message. You don't agree that's fine. This is not for you.

Go back and reread your very first post on this website where you said you thought it would happen to me. As far as where you live or work you haven't learned a damn thing. You're here aren't you?